Deinstitutionalization: what the research shows
A Summary of National Research Studies compiled by Disability Rights Washington
This document identifies and summarizes the results of research studies around the nation regarding the outcomes of deinstitutionalization for people with developmental disabilities. The summary is organized to respond to four questions:
- Can the community meet the needs of people currently living in institutions?
- Is maintaining both institutional and community-based services cost effective?
- Are people with significant medical needs placed at a higher health and mortality risk as a result of moving to the community?
- How can we be sure everyone who moves actually gets the services they need?
- I want to see this research for myself.
Numerous national research studies have found that individuals who move from institutions to the community with appropriate supports experience significant growth. Benefits include improved adaptive behavior skills, increased daily living skills, and greater autonomy and opportunities to participate with family, friends, neighbors, coworkers, and others in the community. This is consistent with the experience in Washington State for individuals provided with necessary supports.
Washington State: Community members with needs comparable to Residential Habilitation Center (“RHC”) residents are currently served in the community. The Division of Developmental Disabilities (DDD) recently compared the needs of institutions residents with those of DDD clients living in the community. Lucenko, B., He, L., Mancuso, D. DDD’s study showed that there is overlap in the types of needs people who live in the community have and those of the residents of Washington’s institutions.
National research: There are positive outcomes for people who move to the community where adequate supports are provided. National research has also found there are people with similar needs receiving services in community and institutional settings. Numerous studies have examined the differences between the services delivered in the two different types of settings. Many of these studies have been compiled in a meta-analysis of 33 different studies which each examined a variety of behavioral and skill development needs for individuals who moved from institutions. Kim, S., Larson, S.A., and Larkin, K.C. (1999). This mete-analysis identifies several positive outcomes show by the studies:
a. Adaptive behavior improvements in the community. After analyzing these studies, researches concluded that “adaptive behavior was almost always found to improve with movement to community settings from institutions….” They attribute this, in part, to the fact that receiving supports in the community as opposed to institutions provided increased access to “environments and interventions that reduce challenging behaviors.” The studies these researchers examined show that self care and domestic skills were the skills which increased the most when people move to the community. There are also significant improvements in academic skills, community living skills, language/communication skills, social skills, and vocational skills when people left institutions for community placements.
b. Positive reaction to community by individual and family. Beyond examining how the former institution residents reacted to their moves to the community, the studies also looked at the impressions of their family members. The studies concluded not only that people did better after moving to the community, but “parents who were often as a group initially opposed to deinstitutionalization were almost always satisfied with the results of the move to the community after it occurred.”
c. Increased autonomy and integration. Additional studies examined whether moving to the community actually had any effect on personal autonomy and community integration, as that is often a stated goal of proponents of community placements. The studies showed that people who live in large institutions have the least amount of control over their lives when compared to people living in other settings. Stancliffe, R., Abery, B., and Smith, J. (2000). The smaller, and more individualized the support setting, the more a person with a developmental disability has the ability to make decisions, exercise control over his or her life, and participate in the community. Id; Heller, T., Miller, A., Factor, A. (1999).
National research studies show that investing in a robust home and community based system is an efficient use of limited resources, because it will free up money that is currently being used to maintain institutions. Institutions are more expensive that community settings, and lack the additional benefits realized in the community. (See 1, above).
Washington State: In the 2009 session, the Legislature directed the Governor’s Office of Financial Management (OFM) to conduct a study of the cost effectiveness of closing some or all of Washington’s institutions for people with developmental disabilities. The resulting report concluded it was advisable to close all of the Intermediate Care facilities for People with Mental Retardation beds and reduce (but retain some) nursing home licensed beds. Davis Deshaies (2009). The report projects that an investment in community services will cause the state to initially incur some short-term cost, and subsequently realize significant savings over the alternative of investing in the maintenance of the institutions and their related overhead. Id.; See also DSHS study, Cost comparisons: Services for People with Developmental Disabilities (1/27/2010).
National studies: A recent national study reached conclusions similar to Davis Deshaies. It found that states with robust, well-developed community supports save money over those with limited community services. Kaye, H.S., LaPlante, M., and Harrington, C. (2009). While this study and the David Deshaies report both made claims of systemic savings, some are concerned that the cost savings may not be realized. A 1990 study compared people with similar support needs and found that many of the claims of savings were not as significant as claimed and that there may not be an overall cost savings. Mitchell, D., Braddock, D., Hemp, R. (1990). However, since the 1990 study, researches have “found that controlling for individual differences, the individuals who left institutions used significantly more community places, engaged in significantly more social activities, experienced significantly more personal interaction, and had significantly more family contacts, and made significantly more choices at an adjusted expenditure rate that was 66% of that of their counter parts who remained in institutions.” Kim, S., Larson, S.A., and Larkin, K.C. (1999) p. 8, citing Stancliff & Lakin (1998) (emphasis added).
The recent research on this area as well as the experience of states which have successfully reduced or eliminated their reliance on institutional services supports the conclusion of the Davis Deshaies report that the legislature will need to allocate resources to expand home and community based services before realizing the budgetary benefits of eliminating institutions. Kaye, H.S., LaPlante, M., and Harrington, C. (2009).
Q: Are people with significant medical needs placed at a higher health or mortality risk in community settings?
Research data does not support the claim that people with significant medical needs are placed at a higher health or mortality risk in community settings.
However, as pointed out in the Davis Deshaies report to the Legislature, nursing facility care in certain institutions is superior to the care provided in community nursing homes, and these individuals may benefit from remaining in place. The David Deshaies report recommends that some nursing capacity be retained in two institutions to accommodate these individuals.
Washington State: Washington state pro-institution advocates have attributed 4 deaths of individuals occurring shortly after moving to the community to “transfer trauma.” This claim is disputed by the Department of Social and Health Services in a recent publication, Mortality Rates: Residential Habilitation Centers and Community Residential Services. DSHS (1/27/2010). In this report, DSHS identified the circumstances of the deaths, three of whom were terminally ill and had been moved so they could die closer to home.
National research: Nationally, there has been considerable research aimed at determining whether there is a heightened risk of individuals who move to community settings dying as a result of the trauma of moving or insufficient care in the community. The idea that there may be a heightened risk was first posed by research using data from moves in California. Strauss, Eyman, Grossman (1996). Subsequently, another research team identified errors with the data used by the Strauss team when they noticed Strauss misattributed 50 deaths to the community. The deaths should have, instead, been attributed to the institutions. O’Brien and Zaharia (1998). The O’Brien team’s analysis concluded that there was no increased risk. Id.
The Centers for Disease Control conducted an independent review of both the Strauss and O’Brien teams’ studies and concluded that neither study was persuasive as both studies relied too heavily on state gathered information, as opposed to controlled studies using set research controlled parameters for data. Decoufle, Hollowell, Flanders (1998).
Following the CDC’s findings, a controlled study was conducted that compared mortality rates of people moved from institutions to community settings to the rates of people with similar support needs who did not move. Lerman, P., Hall Apgar, D., and Jordan, T. (2003). The results of this study showed no significant differences between those who moved and those who stayed.
A: The positive outcomes from deinstitutionalization are achieved where appropriate services are provided, and closely monitored over time. States that have successfully closed institutions have detailed plans for closure.
Washington State: The Davis Deshaies report the Legislature requested had specific recommendations for the development of closure plans, increases to community services, the creation of additional state operated services, the identification of providers who are willing to accept anyone placed with their agency (“no reject”), and implementation of individualized transition plans to ensure a responsible and orderly move for everyone involved, and quality assurance and monitoring of the placements over time. See also, DSHS report, Division of Developmental Disabilities: A Quality System of Health, Safety, and Habilitation (2010).
National studies: Many states have already closed most (or all) of their institutions serving people with developmental disabilities. Several of these states that have conducted longitudinal studies regarding what works and the benefits realized by the people who moved to the community. See e.g. studies cited below in bibliography from Arizona, California, Delaware, Indiana, and Oklahoma.